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Neither Fluoroquinolone Toxicity, nor Recovery, are Rare

Last weekend I went to a seminar that has absolutely nothing to do with fluoroquinolones, drug safety, or advocacy. In that seminar I sat next to a guy who was roughly my age (30-something), and I began to tell him about my experience of getting hurt (poisoned) by Cipro/ciprofloxacin. I was about ten seconds into my story when he said, “Me too – Levaquin.” Yup, he was a fellow floxie. We chatted for a while, and exchanged stories of fluoroquinolone toxicity, then got back to the seminar.

There are a few things about my exchange with him that I’d like to share. First, he has largely recovered. He got hurt by Levaquin about a decade ago. He had severe musculo-skeletal problems (but not a lot of the nervous system symptoms that many floxies experience), and experienced pain in all the joints in his body. He went from being young, athletic, and capable, to barely being able to move. His pain and loss of capacity was so bad that he went through periods of contemplating suicide. Thankfully, he made it through those dark and painful times. He didn’t give me many details about how he got through the last decade, but he did heal. All of his joints (with the exception of his knees) are now strong and pain-free. He is able to work, socialize, and has recently started to exercise again.

The main thing that helped him was time. Knowing that time had helped others through similar experiences also gave him hope that his body would recover if he gave it enough time. For him, the amount of time that it took for his body to recover was a decade. I know that ten years is a long time, and for some of you it may sound like an unbearably long time. For others though, I hope that it is helpful and hopeful that time healed this guy’s body, and that maybe, just possibly, if you give yourself enough time, your body will heal too. (Of course, I don’t know how much time will heal you, or even if time will heal you, but I see it as hopeful that time healed him – even if it was a long time.)

The second thing that struck me about my conversation with this guy is that if two people meet in a random seminar, and both of them have had a life-altering adverse reaction to the same class of drugs, maybe that’s an indication that these reactions aren’t as “rare” as Bayer, Janssen Pharmaceuticals (a division of Johnson & Johnson), the FDA, and all others in the pharma machine would like us to believe. A floxie friend noted the following in a brilliant essay she wrote as part of a legal analysis about the alleged “rareness” of fluoroquinolone reactions:

Another way the risks are minimized is by listing these reactions as temporary or rare. The latter may be true in a technical sense, but what does ‘rare’ actually mean? A quick search of fluoroquinolone victim online support groups reveals that membership for most of them numbers in the tens of thousands, and the FDA’s Adverse Event Reporting System database garnered 3,101 reports of severe adverse reactions to fluoroquinolones in the last quarter of 2013 (the latest data available) alone. These are unscientific and anecdotal statistics, of course, but given that this class of antibiotic was prescribed to approximately 26.9 million patients during 2011 in the United States alone, ‘uncommon’ translates to 2.69 million domestic victims and ‘rare’ translates to 269,000. In fact, many more probably exist but are given a catch-all diagnosis of an ambiguous auto-immune disorder like fibromyalgia or are labeled with some other malady like diabetes, heart disease, hypothyroidism, etc., that arose spontaneously. Also, as in my case, a patient may take one or more courses previously without suffering an entirely noticeable reaction. Additionally, there is an unwillingness of medical professionals to admit a connection between the drug and these reactions. This is perhaps because, at first blush, it seems to defy logic that symptoms could take months to fully develop. But further research into biochemical complexities such as neurotransmitter and mitochondrial dysfunction is likely to explain why the damage follows a cascade-like pathological effect. For these reasons, the individualized nature of the reactions, and of course the patient’s illness itself, many victims surely never make the connection.

Of course disabling adverse reactions don’t happen to everyone who takes fluoroquinolones, but I still believe, as the author of the quote above does, that adverse reactions to fluoroquinolones are far less “rare” than pharma proponents would like us to believe, and that they are connected to many of the “mysterious” diseases of modernity for many.

My encounter with the guy in the seminar also made me think that there are a lot more recovered “floxies” out there than most of us realize. In a comment on her story, Ruth noted:

My neighbor got floxed two months after I did. She made a 100% recovery. We had similar issues, but I was slightly worse than her. Until she talked to me she had no idea what had happened to her.

The music director for the parochial school/church where I worked two years ago got floxed, made an almost 100% recovery. She had some issues with her knee, having had a complete rupture of a tendon there and she is not young. But everything else resolved.

One of the pharmacy techs where I got the Cipro is a Floxie. She was very kind to me when I came there after my reaction. She was not there the day I picked up my prescription or maybe she would have warned me. She is 100% recovered.

My mother also knows someone who made a 100% recovery after a very bad reaction to a quinolone.

I don’t think that fluoroquinolone adverse reactions are rare, and I don’t think that recovery is rare. I also know that not everyone who gets hurt by fluoroquinolones recovers, and that there are many, too many, people who are permanently injured by Cipro, Levaquin, Avelox, Floxin, and their generic equivalents. Permanent injury, and Fluoroquinolone Associated Disability (FQAD), are not near as “rare” as they should be. None of the damage done by flurooquinolones is as rare as it should be. Too many people are getting hurt by these dangerous drugs. Even if many of them recover, poisoning people with dangerous and consequential drugs, when there are safer alternatives available, is wrong, and I hope that it stops soon.

False Idols

August 13, 2014 Comments: 5

Thou shall not worship false idols.

I’ve been thinking about the commandment not to worship false idols a lot since getting floxed.

We, as a society, and probably as individuals too, look to pills to fix us. We look to pharmaceuticals to cure us when we are sick. We worship the pills as if they are magical, and good, and as if they will remove all problems from our lives. There is a systematic lack of questioning about whether or not drugs are actually good – whether the benefits outweigh the costs. We have faith – blind, baseless faith – that all drugs do more good than harm, that adverse effects are transient and rare, that there is enough knowledge about the workings of the human body to anticipate how a drug is going to affect cells and how those effects are going to change the health and well-being of the person who takes them, etc. (To their credit, scientists do try to make drugs safe and understand how they work – but there is a lack of willingness to admit that we know far too little about the workings of the human body to be messing with it like we are.)

We worship doctors as if they are Gods.

I wonder if there is something profoundly broken about this way of thinking. And I wonder if there are some deep lessons to be learned in thinking about where our worshipping of false idols is taking us.

What happened in our floxed bodies is chemical. I don’t think that any of us got sick because of God’s spite or vengeance, or because any of us worship the “wrong” God. (There is NOTHING about getting poisoned that is your fault. Nothing.) Likewise, what it will take to fix us is chemical, and I don’t think that faith is going to be able to repair our broken cells.

But I also think that it is destructive and wrong to worship pharmaceuticals and doctors. They can be helpful and they can be guides – but they are not Gods.

I used to believe that adverse reactions are rare, antibiotics are benign, when a drug does harm a doctor can fix it, the FDA is ensuring drug safety, diseases are well understood, the pharmaceutical industry is working hard to find cures to the ills that plague humanity, etc. I no longer believe any of those things. I have lost my faith. Getting hurt – then gaining a little knowledge about how drugs work – will do that to you.

I don’t claim to know who or how (or even if) we should worship.

But I don’t think that pharmaceuticals or doctors should be worshipped. They are powerful – there’s no denying that. Unchecked power has never led to good though. In politics, unchecked power leads to corruption and tyranny. In medicine, unchecked power leads to poisoning – which leads to chronic disease and suffering.

Drugs aren’t the only false idol that are worshipped to the point of destruction and pain. The oceans, rivers, land, animals and humans are being hurt in the pursuit of fossil fuels. Money – the ultimate false idol – the one that none of us (myself included) seems capable of getting out from under the enchantment of – is pursued to the point of inducing pain, destruction and suffering of the earth and all her inhabitants.

When we, collectively (seriously, no individual blame here), worship false idols, we get poisoned. Our earth and our bodies are being poisoned as we worship money and power and chemical concoctions that we don’t realize the consequences of. It is a shame – a crying shame. My heart and soul ache for us all.

What Getting Poisoned Looks Like

April 18, 2014 Comments: 12

People think that getting poisoned looks like this:

But in the real world, it looks like this:

People whose cells are being destroyed from the inside out, often look fine. Looks can be deceiving.

Everyone with an invisible or mysterious illness should ask the question – Were you poisoned?

Something that everyone who suspects that they may have been poisoned should note is that much of the damage, the poisoning, is indirect. Pharmaceuticals (fluoroquinolones included) and environmental toxins damage mitochondria and, after reaching their tolerance threshold for damage, the mitochondria respond by producing poisonous reactive oxygen species (also known as oxidative stress). Those reactive oxygen species (peroxynitrite is a particularly toxic one) that result from mitochondrial damage cause multi-symptom chronic illnesses. It should be noted by people with chronic fatigue / M.E., that mitochondria are the energy centers of our cells and that damage to them can result in debilitating fatigue. It should be noted by people with fibromyalgia that mitochondrial damage and oxidative stress have been shown to damage nerves and cause body-wide pain. Autoimmune diseases have also been linked to poisoning, and also to mitochondrial damage.

Mitochondrial damage is tricky in that the tests to show it are woefully new and under-utilized. Muscle biopsies can show mitochondrial damage, but they’re invasive and not very reliable. Lactate doublets are a sign of mitochondrial damage, but the research behind them is new and utilization of MRIs to test for lactate doublets are rarely used.

The fact that the tests don’t show anything means that the tests are inadequate (and that they don’t show mitochondrial damage / oxidative stress), not that the problem is “in your head” or that it’s not chemical, or that you haven’t been poisoned.

People who are poisoned are in pain, they are fatigued, they can’t think straight, they are unable to function at the level that they used to. That should sound familiar to everyone with fibromyalgia, CFS/ME and even autoimmune diseases. Were you poisoned? When? By what? And by whom?

If doctors looked at the mitochondria, they would see the destruction of the poison. But they don’t look at mitochondria. As long as they don’t look at mitochondria, they can tell themselves that their drugs are safe; that they’re not poison. Ignorance is bliss for the entire medical profession and the FDA. Too bad their ignorant bliss isn’t reality.

Look around you. The chronically ill people around you are telling you something. This is what the poisoning of America looks like.

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Peer Reviewed Sources:

Molecular Nutrition and Food Research, “Medication Induced Mitochondrial Damage and Disease”

Toxicological Sciences, “Mitochondria as a Target of Environmental Toxicants”

Molecular Interventions, “Mechanisms of Pathogenesis in Drug Hepatoxicity Putting the Stress on Mitochondria“

Biochemical Society Transactions, “Mitochondrial Matirix Reactive Oxygen Species Production is Very Sensitive to Mild Uncoupling”

Science Translational Medicine, “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells“

Cleveland Clinic Journal of Medicine, “Mitochondrial cytopathy in adults: What we know so far“

Current Pharmaceutical Design, “Nitric Oxide-Derived Oxidants with a Focus on Peroxynitrite: Molecular Targets,Cellular Responses and Therapeutic Implications”

Journal of Internal Medicine, “Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise”

Biomed Central, “Central role of nitric oxide in the pathogenesis of rheumatoid arthritis and systemic lupus erythematosus”